Archive for the ‘Dysautonomia’ Category

Fitness with a chronic illness

February 19th, 2016 by Carrie, the Just Mildly Medicated gal

Fitness with a chronic illness, I didn’t think that was an option!

I took almost a year off from Just Mildly Medicated. I posted occasionally on the FaceBook page and kept active on Instagram, but not the blog. I’m not sure you missed me, sometimes when someone stops showing up that happens and it’s okay. I am going to be back. There are multiple reasons I am coming back, mostly because I still need to share my journey.

When I left you I had started cardiac rehab. I was a reluctant participant at the beginning and was frustrated when I would really try only to be hailed down by a nurse and told my heart rate was too high and slow down, but I kept showing up. In my last post I said this to you on the concept of exercise making me all better.

“Unfortunately eating mostly whole foods, exercising, and loving the heck out of me, as well as everyone around me, is not going to cure any of my medical issues. I’d be wary of people who claim any differently, and they’re out there. My own cardiologist is convinced cardiac rehab is just going to zap my autonomic system back online. The truth is I am just trying to work WITH my body, and its issues, instead of fighting my body or hating it.”

That is all still holding very true. I am happy to report that I am still working out just about every day. If you have been following on Instagram you’ve seen the time I am putting into this. Here is a before and after. The blue dress photo was from March, pretty much when I disappeared from the blog-o-sphere, the pink top is from a few weeks ago.

March 2015 January 2016

March 2015                       January 2016

No, working out is not going to fix chronic illnesses that are not after effects of poor health choices. Yes, working out can make you stronger and more secure… and I mean literally more structurally sound. I wasn’t doing myself any favors, physically or mentally, by being afraid of moving. Starting was so slow it was nearly embarrassing. Who am I kidding, it was embarrassing, but progress was made.

Is my blood pressure not dropping from Orthostatic Hypotension? Well, yes, but less frequently and the strength I now have in my muscles is very helpful in keeping me up a little longer and getting to the ground slowly. Is my heart rate normal now instead of jumping all around when my I stand up (POTS)?  It can still be unpredictable but the work I have put in has made the overall time for it to return to normal much shorter and overall it happens less often.

Am I saying working out will “fix” you? No, because truth be told it just isn’t. Am I saying working out can help you become physically and mental stronger? YES, yes I am.

I believe this so much that I am currently enrolled at the National Academy of Sports Medicine so that I am able to help others by being a personal trainer. My local gym has shown specific interest in my progress physically and throughout my course. They are excited to potentially have someone on their staff who, quite literally understands, what it is like to balance health and illness.

It isn’t often that I am all positive mushy mushy, but exercise has made a huge positive impact and I just want to pay the fitness forward. If you have been thinking about trying cardiac rehab I urge you to go, it literally changed my life.

Hey, lets connect on Facebook  <~ just click it

and I am active on Instagram <~just click it

Twitter is beyond me so we’ll just skip that one

this Dysautonomia gal is a Work in Progress

April 24th, 2015 by Carrie, the Just Mildly Medicated gal

A work in progress, this Dysautonomia gal is working hard towards the progress.

We’ll call this work in progress Eat, Exercise, Love…

Unfortunately eating mostly whole foods, exercising, and loving the heck out of me as well as everyone around me is not going to cure any of my medical issues. I’d be wary of people who claim any differently, and they’re out there. My own cardiologist is convinced cardiac rehab is just going to zap my autonomic system back online. The truth is I am just trying to work WITH my body, and it’s issues, instead of fighting my body or hating it.

After being diagnosed with Dysautonomia (dysfunction of the autonomic nervous system) which impacted pretty much my entire body I started seeing my body as separate from ME, after all it was the uncooperative enemy that began holding me back from doing what I wanted. How are you supposed to embrace the thing weighing you down? How can you treat your body well when you’re mad at it? I don’t really know how yet as we are just starting to get on a good foot in this relationship but I am hoping for positive things.

So the goals:

behappy

EAT

Eat mostly whole foods and avoid processed foods with too many chemicals to name, chill on the snacking, and keep track of what is going in my body. I have been surprised and how much and how quickly my diet changed when I was holding myself accountable for what I was eating. Working within restrictions of a Gastroparesis friendly diet and coming a bit closer to hitting those nutritional needs and losing the empty high calorie junk has eased some nausea, helped with a few pounds, and I will admit to having a bit more energy.

(Gastroparesis is a partial paralysis of the stomach which causes poor digestion, malnutrition, nausea, and vomiting. I’ll also add that I am NOT in a “flare” meaning I am not at a point where those symptoms are acute. When they are acute it will greatly impact what I am able to eat and how much.)

EXERCISE

If you’ve been around you’ll know I am in cardiac rehab, and I love it. Yes, I am there because a cardiologist thinks with some conditioning my autonomic nervous system will just decide to function normally. I do believe you can do many things to strengthen your body to help alleviate symptoms but unless you have dysautonomia truly due to deconditiong this theory makes little sense.  Luckily I have other doctors who understand the condition better but I also decided when else could I work out in a controlled environment with nursing staff right there to monitor me… my insurance covers it so I see it as amazing personal trainer time.

As I am exercising more and gaining strength and confidence in my body I am willing to try more. I am doing things like walking on completely flat surfaces for about 10 minutes at a time, that was something that 2 months ago I didn’t trust my body to do. I had passed out too many times from my autonomic system causing my heart rate to sky-rocket and my blood pressure to plummet to trust my body at all. Those abnormal responses are still happening I am just doing better at listening to my body and either going slower, waiting it out, or giving my body the break it needs… but then I am trying again.

I even did a yoga session today! Something I have said for years that I can’t do because of the postural changes. As I am getting stronger I am finding I can do it, it’s just at my pace and not someone else’s. My pace is slow, much slower than I would like, but it is time to accept I am not racing anyone, this is about me.

LOVE

As my body responds to my new ever challenging demands I am finding a better relationship. I can’t say I see my body and ME as a united front yet. We are learning to trust each other, a little dance of give and take. When I ask something new of my body, like yoga today, and it tries I am proud. When my body starts to get dizzy and over worked, like yoga today, I am trying to give it respect instead of frustration and anger. Total work in progress. 

As these changes are happening in me I am also thinking about the love outside of me. I have such an amazing supportive partner who has been a patient caregiver even when at times I know it had to be scary and frustrating. My kids more often than not chose encouragement over frustration at my limitations. For all of my crazy doctor patient dysfunction I do have a team of doctors who understand my condition and are willing to really take the time to be sure I am at the best I can be. My nurses, oh how I love the nurses involved in my care. My friends, both from way back to new ones, I am amazed at the understanding and compassion that comes from them. I am not usually an overly mushy person but I need to be sure these people really know what that means to me.

everyday

 

Are you a work in progress? What are you working on?

Did you miss about my starting Cardiac Rehab? <~ click it

 

Cardiac Rehab and Dysautonomia

April 10th, 2015 by Carrie, the Just Mildly Medicated gal

Cardiac Rehab and Dysautonomia

Exercising with Dysautonomia can be tricky. Dysautonomia literally means dysfunctional autonomic nervous system. Your autonomic system is responsible for everything your body is busy doing that you don’t have to give any thought to. You can thank your autonomic system for handling things such as digestion, temperature regulation, heart rate, and blood pressure. When your autonomic system decides to slack off, or be flat out non-compliant, exercise can be difficult.

In just standing, let alone exercise, you’re body is working overtime to try and keep your blood pressure, heart rate, and oxygen levels appropriate. When your body is flat out non-compliant you struggle with an abnormal cardiovascular response to just about everything.  This puts you in a category of people who are both considered orthostatic and exercise intolerant as well as in need of an exercise program. You know, because life isn’t hard enough.

Most specialists that work with Dysautonomia patients advise a recumbent exercise plan along with medication, hydration, and salt loading to help combat the roller coaster of symptoms. I personally feel the most balanced in my treatment plan when I am following all of the mentioned aspects, but can admit hopping on and off the exercise bandwagon and due to my inconsistency I wasn’t seeing much in the way of results.

During a recent visit with a cardiologist I was told I needed to safely up my game. I’ve used a recumbent bike at home and during good months could average anywhere from 20 to 60 minutes 3 to 5 days a week. Truth was it just wasn’t consistent, let alone that the resistance wasn’t high enough for a challenge and my body was used to that particular exercise. When the cardiologist said she thought cardiac rehab would be a good fit for me I jumped at it.

Cardiac rehab for the Dysautonomia patient is a safe way to start or enhance a work out plan safely while having your oxygen level, heart rate, and blood pressure monitored by nurses. You’ll also have access to recumbent equipment not found at most gym facilities. The truth is you may complete the entire program and have little to no improvement in your cardiovascular response to exercise but that doesn’t mean it isn’t helping.

image

recumbent steppers and recumbent elipticals

 

Moderate intensity exercise for at least 30 minutes 5 days a week is recommend for the majority of people, including those with a chronic illness. A regular exercise program helps as a preventative measure for many health issues, improves mental health, and promotes a positive self esteem. If your cardiologist agrees that cardiac rehab is a good idea for you and your insurance approves your plan you’ll be ready to get started.

My Cardiac Rehab Suggestions:

The nurse will share the doctors approved plan, if you have concerns about this plan in any way speak up. It is not recommended for most Dysautonomia patients to exercise upright. Other than a walking test done to have a strip from the ECG of my heart rate and rhythm that was under 5 minutes I have not done anything upright in the first month that I have participated in cardiac rehab. If you are guided to warm up at a treadmill please tell them you have orthostatic issues, you’ll be shown several recumbent options.

horizontal-running

 

Have your music ready. Most people enjoy working out more if they have music they like. I use an app on my iPhone called Pandora and set of ear buds. They will usually have a few TVs and headphones available that you can borrow there as well.

You’ll have a goal, mine was 30 minutes of moderate cardio. If you’re not done don’t be done. This is a unique opportunity to be monitored during different types of exercise. There will usually be everything from weight machines, balance balls, and free weights, tell the nurse you’d like to be shown how to use them properly and also ask them to let you know how your body responds. I have found that I love working out with weights, be willing to try something new. Now that I am told when my heart rate is too high I and can lower the weights and add extra reps to get the same benefit in a way that works better for me.

Don’t be discouraged if you don’t meet your given goal, have to take the rest of the day off from doing much else, or it’s just harder than you had hoped. You aren’t in competition with anyone except yourself. The goal should be to become a stronger and healthier you. This happens in small ways that add up over time.

abs

Know how many sessions you have and plan accordingly. The idea is to create a new normal, something to continue after cardiac rehab. I had 36 sessions and decided to go 2 times a week and have developed alternate workout plans to do at home so that I am working out 5 to 6 days a week.

Don’t go on a diet, but do consider changes you can make to your diet. The idea is for this work to pay off and the last thing you want to do is come home from working hard and sabotage all that effort.

this is my new baby  bicep muscle

this is my new baby
bicep muscle

Want to follow more of my exercise efforts?

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I forgot my meds…

September 24th, 2014 by Carrie, the Just Mildly Medicated gal

I forgot my meds, a lot of days in a row… okay, a lot of weeks in a row…

I think most people on a long term prescription routine fall off the wagon, be it a Just Mildly Medicated gal juggling many prescriptions or someone who has one steady nagging medication to take daily forevermore.  This is about the summer when I was a Medical Radical and Pharmaceutical Nonconformist, okay so really it was more that I was just a pissy slacker.

radical

Many people make this choice; they get tired of paying for the medications, taking the medications, feeling the side effects of the medications, and not so much the original alleviation the medication was supposed to provide. They decide it isn’t working for them and discuss it with their doctor or decide to consult Google on if it is a medication that can just be stopped. (Come on, we’ve all consulted Google)

That is not this story…

To tell the story we must go back, way back… okay, it wasn’t that far back. Just take my word that I am super organized and took my meds exactly as I was supposed to, I handled my IV therapy like a pro and was hooked up (or flushed my port) at the same every day. I was also following a gastroparesis friendly diet (which I loathed), salt loading, and drinking plenty of fluids. I still didn’t feel “well” and I was a bit bitter about that, I mean who wouldn’t be?

When I spent a week at Mayo in Rochester, MN I was off meds and IV fluids for the duration. (I did stay on a few that the doctors at Mayo thought would not be good to just stop, but they were few). I actually didn’t feel all that much different. I kept waiting to come crashing down, but I felt my normal episodes and tested just about the same as before I started taking all of my medications.

It was talked about again that because of the gastroparesis (partial paralysis of the stomach linked with autonomic dysfunction) some of my meds may not be absorbing properly and I may not be receiving the benefit of them. My immediate thought was, “Then why in the hell am I taking them?!”

I tuned out on the last five minutes of the Mayo Clinic doctor speaking to me as Phil Collins came to me and sang I Don’t Care Anymore, and when Phil Collins comes to sing to you, well, you listen.

Phil also came to me and sang Sussudeo at the Cardiologist once… he and I have a connection… but I digress.

I wouldn’t say I was in a depression over the topic of being Just Mildly Medicated but apparently a seed of doubt and stubborn rebellion was planted. I think of it as a period of time that I tried to give my illness the middle finger as a treatment plan to see how that worked out.

When I came home I continuously “forgot” certain meds and became very lackadaisy with my IV treatments (lackadaisy means lazy and uncaring for any non-southern folk).  A routine that I once took very serious shifted and became a series of forgetting and not being very concerned about it. It wasn’t until months ater that a real decline in my health was undeniable.

My flares were lasting longer and happening more frequently, I still didn’t attribute it to the fact I hadn’t been taking half of the medications I was supposed to. I honestly didn’t even consider it. I can’t believe that it didn’t put a spark under me to get focused on my treatment plan, but I really didn’t admit to myself how off track I was.

It wasn’t until an episode that caught the attention of both my nurse and my husband.  In two separate conversations my husband pointed out that I’ve not been doing well and something needed to be done about it. My nurse knew my blood pressure readings had been odd and my weight changing. They both could track it to the last month and a half. That would be a month after my new routine of forgetting my meds.

I had to acknowledge to them, and myself, that I hadn’t been taking my medications as prescribed and I hadn’t stayed on top of my IV therapy; that this decline was likely of my own doing. Not a conscious choice to abandon my plan, just a gradual shift off the beaten treatment path.

meds

Dysautonomia is a chronic and progressive illness. This means it is forever and is likely to become worse over time. When taking all of my meds and IV therapy options as prescribed I still have episodes and I don’t feel “well”. However my treatment plan is important. It is designed to give me the most personal freedom over my illness that currently is offered.

I am back on track now and hope to be feeling an improvement very soon.

Love,

The reformed Medical Radical and Pharmaceutical Nonconformist Just Mildly Medicated gal <3

Keep Calm and Take your Meds

 

Want to check out when I took a tour of Canine Partners for Life for the service dog I am on a wait list for?

How about when Phil was buzzing Sussudio in my ear?

Life with Pandysautonomia

September 22nd, 2014 by Carrie, the Just Mildly Medicated gal

As a blogger it only makes sense that I am also a blog reader. Occasionally I find a blogger that makes me sit and read while mumbling, “Seriously, she nailed it, that is exactly how I feel!” Well that is exactly how I feel about Rach from The Chronic-Ills of Rach. Take a second to read Rach’s 30 Things About My Illness and then head over to her blog and check her out!

 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Pandysautonomia

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: I was a teenager

4. The biggest adjustment I’ve had to make is: to the difference between what I hoped my life would be like and what is actually is like.  I let go of a little bit more every day.  That is hard.

5. Most people assume: that someone will just fix me

6. The hardest part about mornings are: juggling the meds/food/fluids so I can get vertical.  If I get it wrong I will pay for it all day.

7. My favorite medical TV show is: hmmm.  One Born Every Minute!

8. A gadget I couldn’t live without is: My seat/cane

9. The hardest part about nights are: managing my bladder

10. Each day I take 27 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried almost everything, but the only one that stood up was osteopathy

12. If I had to choose between an invisible illness or visible I would choose: visible.

13. Regarding working and career:  I miss it.

14. People would be surprised to know: that I actually have really high standards. If they judged me based on how things are they would think I am a lazy housekeeper, unambitious and probably a bit mental.

15. The hardest thing to accept about my new reality has been: falling short of my own standards every day.

16. Something I never thought I could do with my illness that I did was: stood up to doctors and ask for what I need.

17. The commercials about my illness: ?

18. Something I really miss doing since I was diagnosed is: being physical

19. It was really hard to have to give up: my dreams for our family, the plans we had as a couple.

20. A new hobby I have taken up since my diagnosis is: writing

21. If I could have one day of feeling normal again I would: dance

22. My illness has taught me: to be a patient patient, but only to a point!

23. Want to know a secret? One thing people say that gets under my skin is: how are you?

24. But I love it when people: really want to know.

25. My favorite motto, scripture, quote that gets me through tough times is: slowly slowly catchee monkey

26. When someone is diagnosed I’d like to tell them: to get as informed as they can, join a support group, distract.

27. Something that has surprised me about living with an illness is: how many other people are, too.

28. The nicest thing someone did for me when I wasn’t feeling well was: listen.

29. I’m involved with Invisible Illness Week because:  I believe when people know how many people suffer there will be more kindness.

30. The fact that you read this list makes me feel: like I am not just a statistic.

 

Rach

Katya on Life with P.O.T.S and R.I.S

September 8th, 2014 by Carrie, the Just Mildly Medicated gal

I am always surprised by the connections that I have made through my chronic illness. Katya is one of those connections. I am happy that Katya was willing to share some of her life with *P.O.T.S as many who suffer with the condition are teenage girls. Katya is a 16 year old who has been living life with *dysautonomia for over a year now and I am glad she chose to share some of her story with us during Invisible Illness Awareness Week.

Katya

30 Things About My Invisible Illness You May Not Know

 1. The illness I live with is:

Postural Orthostatic Tachycardia Syndrome, or POTS.  I also have RIS, Radiologically Isolated Syndrome.

2. I was diagnosed with it in the year:

I was diagnosed with POTS at Mayo Hospital in Rochester, MN in the Summer of 2013.  I was diagnosed with Radiologically Isolated Syndrome in January of this year.

3. But I had symptoms since:

Before I was diagnosed with POTS, I had been having symptoms for at least a year.

4. The biggest adjustment I’ve had to make is:

I had to stop going to school last year because between doctors’ visits and medicine adjustment it became too difficult

5. Most people assume:

I choose to be antisocial when in reality I can’t go out or have people over because I’m feeling ill or am so fatigued I can hardly stand up.

6. The hardest part about mornings are:

Waking up to realize that another day of fatigue and debilitation await me when I step out of bed.

7. My favorite medical TV show is:

House M.D.  No doubt about it.  House all the way!

8. A gadget I couldn’t live without is:

My computer.  My darling little computer has helped me distract myself from the grieving of having a chronic illness.  Between Netflix and Amazon Instant Video I twisted the definition of “being social”.  From Downton Abbey to Real Housewives of Orange County, I created my own world when I couldn’t be part of the real one.

9. The hardest part about nights are:

When I lay my head down and begin to think about how I could have pushed harder or what the day could have been like if I wasn’t ill.

10. Each day I take __ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:

I haven’t tried any alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose:

This is a very tough and emotional question.  At the moment, I choose invisible because I am able to choose who gets to know about my illness and what I am going through.  Invisible illness also limits the amount of pity I would receive from strangers.

13. Regarding working and career:

I’m only 16 and I made most of my spending money through babysitting.  After a couple cases of being on the edge of fainting while trying to watch the children I had to give that up.  I loved the children I use to babysit and no longer get to see them like I use too.

14. People would be surprised to know:

Before I got ill I would run 6 to 10 miles every single day after school.  Running was my passion and my outlet.  I have had trouble finding something to replace it.  I doubt anything ever will.

15. The hardest thing to accept about my new reality has been:

That there is nothing I can do to fix it.  This makes me feel out of control.  It is hard to come to terms with the fact that no matter what you do you can’t change the way you feel.

16. Something I never thought I could do with my illness that I did was:

Go to Disney world with my family.  My dad pushed me in the wheelchair the entire time.  We also got bumped up to the front of the line of every rollercoaster.

17. The commercials about my illness: none

18. Something I really miss doing since I was diagnosed is:

The simple things.  Taking a hot shower (I have heat intolerance).  Going to the grocery store with my mom.  Driving.  Leisurely strolls.  Going to school.

19. It was really hard to have to give up:

The visions and plans I had for my life.

20. A new hobby I have taken up since my diagnosis is:

Collecting sock monkeys.  I take at least one of them on my medical adventures and take a picture of them and put it on facebook to tell my story from time to time.

21. If I could have one day of feeling normal again I would:

Run until I dropped.  I would go to watch my little brother play in his basketball/soccer games (I have missed so many of these).  I would jump up and down and scream and yell without fear of collapsing onto the floor.  I would go shopping with my mom.

22. My illness has taught me:

My illness has shown me how freaking naïve I was before getting ill.  I had no idea what chronically ill even meant.  I could not have even fathomed the pain and suffering that a chronically ill person and their family experience.  I am so blessed and so privileged to be able to relate with such warriors and heroes that are those who battle everyday with chronical illness.

23. Want to know a secret? One thing people say that gets under my skin is:

“I looked online and read that POTS can be cured by exercising.  Have you tried that?”  My response:  “Oh really, well I looked online and saw a picture of you captioned: Dumba**!”

24. But I love it when people:

Say things like, “I don’t know how you do it.”  or “How are you still going?”  It makes me feel like they’re acknowledging that this is a real, physical illness.

25. My favorite motto, scripture, quote that gets me through tough times is:

2 Corinthians 12:9

‘But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.’

There is nothing better than to hear that your pain is not in vain.

26. When someone is diagnosed I’d like to tell them:

Don’t avoid talking about your illness or brush it off as though it isn’t there.  Attempt to accept your illness.  It is never fully possible to completely accept your illness, it just isn’t.  But the more and more you work at it the happier you will be.  Do not let your illness consume you but remember and realize that your illness is a part of you forever.  Don’t fight this fact.

27. Something that has surprised me about living with an illness is:

The majority of people who are also ill or going through difficult situations.  I had no idea of the gigantic amounts of information and nitty gritty gossip I could receive by simply opening up to people about my illness and hurts.  As I began to do this people started to tell me all about their current and past troubles.  Opening up to people and listening to them while they open up to you makes for a much stronger and deeper relationship.

28. The nicest thing someone did for me when I wasn’t feeling well was:

My mother fills my water bottle, makes me food, and massages my feet.  My mom does this on a daily basis.  I still don’t know how she does it.  Many people have brought me flowers, food, and gifts but there is no one who has comforted me and held my hand like my mother.  She is a blessing.

29. I’m involved with Invisible Illness Week because:

I have an invisible illness and Carrie from Just Mildly Medicated asked if I would do a guest post.  I am so honored to be part of this week because it is easy to get cooped up with my illness and forget the many other people dealing with their own.

30. The fact that you read this list makes me feel:

This gives me hope because if you care enough to read this then maybe others will and this will help spread awareness of POTS and Dysautonomia.

fight pots

 

Big thanks to Katya for stopping by during Invisible Illness Week!To learn more about Invisible Illness Week click the link ;)

*Dysautonomia- umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System.

*P.O.T.S – a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing.

Kat and Beau, a Dysautonomia Service Dog Alert Team

January 2nd, 2014 by Carrie, the Just Mildly Medicated gal

As I sit on a wait list for a service dog I have become more aware of the ways my own life will change when my match is ready. Not just the excitement of the call or the trip to meet him or her but also the changes that having my own canine partner with me will bring.

 

I am lucky enough to be part of a large social network that gives me the opportunity to connect with so many people. Kat is one of the people I have connected with and she has been kind enough to share her journey with me and now with all of you.

 

Thank you Kat!

Kat and Beau

 

 

I know you suffer from Dysautonomia but the illness can be so different from person to person. Can you share with us how Dysautonomia has impacted your life?

 

“Dysautonomia has impacted my life greatly. My symptoms started when I was just 9 years old. I would pass out on occasion but doctors couldn’t find anything wrong with me. Since my symptoms weren’t too bothersome, I began competitive swimming and was ranked in my state. Swimming was something I loved and planned on doing through college. At age 16, I had a tilt table test done and when I passed out, my heart stopped for 28 seconds. I was diagnosed with Neurocardiogenic Syncope and had a pacemaker implanted. We believe the surgery triggered my Dysautonomia and caused my symptoms to intensify.

After my surgery, I began passing out daily- 5 to 10 times. I unfortunately had to quit swimming because my symptoms became so extreme. Early this year, I saw a specialist who officially diagnosed me with Dysautonomia, POTS, and Gastroparesis. Day to day, syncope is my most bothersome symptom because it greatly limits my independence. I often require the use of medical devices such as wheelchairs, walkers, and shower chairs. I’ve seen many specialist for my conditions and none of them really know what to do with me. Two cardiologists have officially said that I am the most complicated case they’ve seen. For most, medicine does the trick. 

 Many people ask me how I can go through all of this with such a great attitude and I just tell them about all of the amazing people I have met along this journey and the many blessings I have received that I wouldn’t have otherwise like Beau.”

 

What originally made you think you pursue a service dog?

 

“My grandmother heard from a friend about a one of a kind dog alerting to syncope. Most medical alert dogs alert to diabetes, seizures, and allergies so syncope is new to the service dog world. I was turned down by multiple organizations until I finally found one willing to experiment and try to train a dog for syncope. “

 

I’ve had the pleasure of seeing pictures of Beau before today and he is an adorable labradoodle. What was the process like to chose Beau?

“Beau’s trainer prefers to work with labradoodles not only because they are loyal and loving dogs, but because they are also hypoallergenic. The breeder did an aptitude test on the puppies to see which ones would be good for service work and that’s how Beau became mine. I couldn’t imagine having any other dog be my hero. “

 Blog Kat1

 

What types of things will Beau do to assist you?

“At an early age of only 11 weeks old, Beau alerted to a syncopal episode and has been doing so ever since. That in itself is a miracle but Beau will learn much more. He will be able to pull my wheelchair, help retrieve dropped items (bending over causes syncope) get help when needed, and much more. He is amazing and will help me to gain my independence back. My hope is that I will be able to attend a college with him rather than doing online courses.”

What is Beau learning right now?

“Beau naturally began alerting to syncopal episodes when he was just 11 weeks old. Ever since then, he has hasn’t missed an episode. Right now, Beau is working on a multitude of things. He already has all of the basic commands down and even knows them in sign language. So the next step for him is to learn the more specific commands that I need him to know.”

 

You are able to share time with Beau during his training so you are getting a taste of what daily life with a service dog will be like. What would you say has been the biggest adjustment to life with a canine partner has been so far?

 “The biggest adjustment to having a service dog at your side is learning to deal with people. Many will stare and some will even make comments. Some of those comments will be positive, and some will be negative. It’s also really hard when you are dealing with an employee who doesn’t know ADA law and tries to tell you that your dog is not welcome. This is all the more reason why we need to spread Service Dog Awareness!”

Beau at work

Beau at work

Injectable Power Port to treat Dysautonomia; The First Month

July 9th, 2013 by Carrie, the Just Mildly Medicated gal

I was waiting to sort out how I felt before writing about the things that are currently happening. That was when I remembered the quote I love so much and decided I need my laptop to help me sort it all out.

“I write because I don’t know what I think
until I read what I say.”

Flannery O’Conner

My last post was about my first week with my power injectable port to start regular IV therapy as a preventative treatmentfor Dysautonomia, specifically the Orthostatic Hypotension aspect of it. I’ve had a few emotional swings about the port as well as the IV therapy itself and was hesitant to share my feelings because it may not be well received by many who believe it to be the coveted treatment option.

To go back to where I left off in the first week of IV therapy; the first dressing (massive sheet of tape that goes over your accessed port) bothered me so much that in the wee hours of a Sunday morning with absolutely no sleep I began to understand why wild animals gnawed at their own wounds in a grotesque fashion. I was one strip of sanity away from doing just that myself.

I called my home infusion company at 8 am that Sunday morning and begged them to get word to my nurse to please come help me before my sister in law who was visiting was going to have to check me into an institution. They sent someone right away and the nurse actually said I should have called hours ago when it was first making me insane. She was set to change the dressing but I wanted it out, the bandage and the needle. I needed sanity and didn’t think I could achieve it while accessed.

The next time I was accessed we tried a different dressing tape that was an improvement and then a third that hasn’t bothered me at all. YES!

Me while NOT in the throes of insanity with the second bandage type.

However going through 6 liters of saline a week I was still at best mildly dehydrated. I am still playing catch up and have yet to reach a point where I am ahead of the dehydration. I don’t yet feel like I have reached a point where I am truly using this as preventative. I have spoken to my doctor and we are adjusting how many liters a week I should do and if a few saline bags infused with vitamins might help me get ahead of this.

During the first month of IV therapy I have had the same number of episodes, some convulsions and others syncope or what I refer to as a pretty intense pre-syncope (a very hard time keeping conscious with slurred speech and very disoriented but remaining conscious) . I have been able to do more and I can sit up or stand for longer before feeling dizzy. By longer I would say that before I had five minutes or on a great day 15 minutes, now I have more like 15 to 25. However I am hooked up to an IV for six hours three days a week for those extra few minutes.

I will say though, I have done a lot more this month than I’d normally have done. My husband left town the day after my port placement and even with the help of family and friends it has been more taxing. I also went on vacation, my parents did the driving but I was in the car for a 10 hour trip and away from home. Not to mention the stress of learning everything to do the IV therapy at home but to do it at an unfamiliar place was different.

My current belief is that this is a lot of work for an extra few minutes before Dysautonomia grips my blood pressure and pulls it down. I am still  early on and trying to find the amount of saline that works for me as well as the speed at which it is best infused. As you can see my review is mixed at best. I hope to find the right balance for me soon.

infusion day

Injectable Power Port for IV therapy to treat Dysautonomia

June 5th, 2013 by Carrie, the Just Mildly Medicated gal

As much as I hate it when I read a blog post that starts with “So it’s been awhile…” or “Sorry I haven’t posted in a long time…” this is kind of that post.

I’ve been super busy. Okay not really, but I’d say super busy for someone who considers making lunch, checking the mail, and doing the dishes a pretty full day.

Okay kids gather round and I’ll tell you about the first week of having an Injectable Power Port for IV therapy to treat Dysautonomia…

Quick basics for those who are not familiar; a power injectable port is a small medical device that is just beneath the skin usually put in the upper chest, just below the collar bone, mine is on the right side and goes into my jugular vein. Medications can be given and blood can be drawn from the port. Ports are mostly identified with people receiving treatment in the medical area of oncology and hematology.

Dysautonomia patients can often opt for port usage for proactive treatment to combat frequent dehydration and elevate blood volume to hopefully avoid syncope (fainting) and the need for multiple IV treatments post syncope.

Okay, now back to me!

This is an image of the Smart Port power injectable port that is in me
I had no preference in the brand of port and left that to the
surgeon who performed the procedure

 

(BTW I am a total newbie at this so the terminology is new to me. This is my first few days with the port)

So it started with a call to my Dysautonomia Specialist. I had passed out again and had a hard time coming out of it. It was that syncope that wanted to take you over, you start to come to and sit up slowly and BAM your vision gets blurry and you go right back out. I had no issue getting the IV at the ER but in the past they have said no, or admitted me for observation instead of the IV my body was so thirsty for.

My specialist and I agreed it was time to be proactive with regular IV therapy but I wasn’t sure how I wanted to go about it. There are a few options.

  • You can just have a new IV done each time but my doc wanted the therapy three times a week so that was not a first choice
  • The PICC Line is the next option and has some huge pros. It isn’t a surgical procedure and they can be used for anywhere from 2 weeks to 2 months before needing to move location. The cons for the PICC Line were from people who have used them mentioning the inconvenience of having something sticking out from you at all times and you cannot get it wet (increased risk of infection) and the covering for it sometimes let water through.
  • The next option was a power injectable port. It is an out-patient procedure although sedated enough to take the edge off you don’t need to be put under and the port can last for many years. While accessed it does need to be covered but when not accessed the port is under the skin and though it can look like a small dome it is not as noticeable as having something like a PICC Line accessed all the time.

I went for the port which was what my specialist had wanted. Their office called it in and within 2 weeks I was scheduled for my port placement.

The procedure:

I was scared, like really scared. I am someone who would prefer to be knocked out for dental work let alone something being inserted in my neck/chest. When I got to the hospital they put me in my room and did some labs to make sure my clotting was up to par then I waited.

I passed the time reading Game of Thrones until my mind started to wander. Am I sick enough for this? Ugg I hate the train of thought when I admit I am too debilitated by my illness to do normal things, like shopping for clothes or make it from the car to the baseball fields where my sons play but I also know there are people much more debilitated than me. I battle for quality of life other people are battling for life.

Then they came in to wheel my bed off to the OR… ahhhh! I’ve changed my mind, forget it I am going home… Okay I was thinking it but I didn’t say it. They went over the procedure and we got started, well they got started, I just laid there.

If you are considering this procedure, as many Dysautonomia patients are, the worst part is the injection to numb you, it kind of feels like the dentist numbing you only maybe ten times as bad and in your neck (sorry being honest). All and all for a surgical procedure it was not bad. After 3 hours bed rest I was about to start the discharge process. Although I think when I watch movies where someone gets truth serum injected into their neck I might have some PSTD flash backs.

Me during the first 24 hours. A former plastic surgeon did my
port placement, I know you’re jealous ;)

I was so sore the next day I wanted to kick my doctor and every one of my spoonie peeps who said they loved having a port. By day 4 I wasn’t very sore at all, which was good because the nurse came to do my very first IV therapy. Now even with the port you have options as to what needle and how much nursing assistance you’d like and how much you feel you can do on your own.

This day 4 post-op before being accessed, the 22 gauge Huber,
and then accessed for the very first time
Me getting accessed and my first port lesson

 

I will have therapy M-W-F so I have opted to have a nurse come on Monday to access me (put the needle in and dangly IV connector and cover the area) and stay accessed until Friday. As of now the nurse will come on Friday to remove everything and I will be free of it until she (not being sexist, the company has 3 female nurses so it’s she) comes Monday to access it again. On the in-between days I do need to flush the port with saline and then heparin. I did the flush of the port with the nurse yesterday after my first IV therapy and today, my off day, by myself.

The big questions from fellow Dysautonomia peeps…
“OMGosh WILL YOU GET TO THE PART WHERE YOU TELL US IF IT WORKED???!!!”

I am only doing one bag Tuesday and Thursday of this week, my orders are up to 2 bags 3 times a week, so I am working up to finding my sweet spot right amount. I hoped to feel energetic after the bag was done. I didn’t. I was cold which led me to lay under a blanket on the couch which left me feeling tired. I also felt a bit fuzzy after standing up and moving to a better chair to unhook the IV and do the flushing. I will add that I didn’t sleep the night before.

A few hours later was dinner time. I made dinner, we ate, we (kiddos and I, hubby is out of town) cleared the table, and then I packed lunches for 2 of my 4 kiddos for summer session at school. Afterwards I sat down and realized I hadn’t taken a break leaning over the counter which I normally would have done.

However when I did orthostatic numbers that night I was just as all over the place as a regular good night with readings of my HR being 67 to 92 and BP from 139/80 to 119/75. Again, not “bad” number fluctuations in the world of Dysautonomia just that they are the same in fluctuation as I’d have a good evening before proactive IV therapy.

Next week I’ll do a bag and a half M-W-F and will hopefully have great things to report.

Want to know more about Dysautonomia click here

If you have comments or questions on anything I always read the comments posted. I will answer, even if its “I haven no idea” and reply so you can stop back to see the response or I think you can click something to see responses. I also love you more when you comment… it’s true.

Just Mildly Medicated’s FAQ about Dysautonomia

April 22nd, 2013 by Carrie, the Just Mildly Medicated gal

Just Mildly Medicated’s FAQ about Dysautonomia

I think I might have that crazy Dysautonomia thing that you keep talking about, so what now?


After starting this blog about my personal journey through life as a Dysautonomia chick I have been asked many questions about Dysautonomia. I wanted to try and put the FAQs in one place, and here you have it. I will add to it and repost it as questions come up. If nothing else Chronic Illness is a learning process.

**I am not a Doctor, Lawyer, Baker, or even a Candlestick Maker. These are answers from my personal experience with my type of Dysautonomia, speaking with my doctors, as well as from reputable sources which are linked back so you may read more from them if you would like.**

Q. What is Dysautonomia?

Dysautonomia International defines Dysautonomia as an umbrella term used to describe various conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System (ANS) controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye and temperature control.

Q. What are the symptoms of Dysautonomia?

A. There are a wide variety of symptoms of Dysautonomia. Dysautonomia is a large umbrella term for dysfunction of the Autonomic Nervous System. The following link is from a post on Just Mildly Medicated that was a tongue and cheek jab at life with the symptoms of Dysautonomia and the side effects of the medications. You can also find a list of symptoms on Dysautonomia Information Network here.

Dizziness, Tachycardia, Bradycardia, Exercise intolerance, Clamminess, Anxiety, Flushing, Postprandial hypotension, Blood pooling in limbs, Intolerance to heat, Feeling cold all over, Low blood pressure upon standing, Cognitive impairment (may include difficulties with concentration, brain fog, memory and/or word recall), Narrowing of upright pulse pressure, Hypovolemia, High blood pressure, Hyperventilation, Numbness or tingling sensations, Reduced pulse pressure upon standing, Low back pain,Aching neck and shoulders , Noise sensitivity, Light Sensitivity, Disequilibrium, Disabling Fatigue, Sleep disorders, Headache/migraine, Myofascial pain, Neuropathic pain, Bloating after meals, Nausea, Vomiting, Abdominal pain, Diarrhea, Constipation, Bladder dysfunction, Pupillary dysfunction , Blurred Vision, Tunnel vision, Arrhythmia, Chemical sensitivities, Easily over-stimulated, Food allergies/sensitivities, Irregular menstrual cycles, Loss of appetite, Loss of sex drive,Muscle aches and/or joint pains, and Swollen nodules/lymph nodes, Polydipsia (excessive thirst)

 

Q. Do I just tell my doctor I think I have Dysautonomia?

A. In short yes. Let them know why you think you may have Dysautonomia, be sure to write down the symptoms you experience so you don’t draw a blank when you get there.

When you go to the doctor they take your vitals one time while sitting down, people with Dysautonomia usually have abnormal swings in blood pressure and/or heart rate after standing for a few minutes (Orthostatic Intolerance). If your doctor doesn’t offer to do this on his or her own you may want to suggest it.

I personally recommend doing your own Poor Man Tilt Table Test several different times over a few days and keep track of the numbers to bring in with you.

 

Q. What is a Poor Man Tilt Table Test and how can I do it?

A. The Poor Man TTT is an easy way to see if your BP and HR have a normal reaction to standing. I bought my blood pressure and heart rate wrist cuff at Wal-Mart for around $40. I do it the same way it was done in my Neurologist’s office. Lie down for about 3 to 5 minutes and take BP (I take a photo of my results with my cell phone). Then stand in a relaxed way and take it again at 3, 5, and 10 minutes.

You are looking for a change in blood pressure, usually a drop but possibly a rise, of  20/10 from your resting blood pressure or a jump in heart rate of 30 beats per minute or over.

Downside to poor man Tilt Table Test are that you are weight bearing when standing up and have a range of motion to monitor your BP and HR. The results will not be exactly the same as a TTT at a medical facility.

You may find that you are not a well trained monkey and your body will have a range of abnormal responses that don’t follow a pattern. This will still be helpful information for your physician to decide on what tests he or she may be interested in having done.

here is my own BP drop of 21/10 after 5 minutes after standing

 

here is my own HR increase of 31 after 3 minutes after standing

 

Q. How is Dysautonomia diagnosed?

A Tilt Table Test is the most common test done for diagnosing Dysautonomia. You will lie down on a secured table and have vitals taken over a period of time. You are then raised at an upright angle but non-weight bearing and they continue to monitor your HR and BP, usually for 45 minutes.

Other tests you may be asked to do are ECG, EEG, and wearing a Holter Monitor. Less common tests, usually done at facilities such as the Mayo Clinic, are Quantitative Sudomotor Autonomic Reflex Testing (QSART) and Thermoregulatory Sweat Test. I wrote about these tests after talking to my Neurologist.

 
Q. What type of doctor treats Dysautonomia?

A. Best case scenario you will end up with a team. Your Primary Care Physician usually starts you off with a referral to cardiology as well as neurology.  Depending on your symptoms your team my include specialists like an Allergist, Neurologist, Gastroenterologist, and an EP Cardiologist.  As for who will end up handling most of you treatment for Dysautonomia that will depend more on the doctor you feel most comfortable with and less on the type of doctor they are.
 
Q. Are there Dysautonomia Specialists? 
A. Though few and far between there are doctors and facilities that specialize in treating Dysautonomia. Here a few in the US I know of.
POTS Treatment Center in Dallas, Texas
Vanderbilt Autonomic Dysfunction Center in Nashville, Tennessee
Dr. Grubb in Toledo, Ohio
Dr. Randy Thompson in Pensacola, FloridaYou can find a list of doctors who are familiar and have experience treating Dysautonomia on the Dysautonomia Information Network website.

 

Q. What specialists do you see? 

A. As of now I have an EP Cardiologist, Neurologist, Gastroenterologist, and Dr. Thompson is my Dysautonomia Specialist.

 

Q. What can I expect as far as treatment? 

A. Some popular non pharmaceutical treatment options are compression wear, my personal favorite compression wear is Juzo. Salt loading is very important with Dysautonomia, I wrote about salt loading and what exactly it means here. Drinking enough water is also important with Dysautonomia, most specialist recommend 64 to 72oz a day.

As far as medications you can expect to discuss beta blockers, Florinef, for hyperadrenergic POTS  phenobarbital, vasoconstrictors, as well as saline IV therapy. Again, I am not a physician and by no means am saying you need these medications for the treatment of Dysautonomia, just that they are commonly discussed.
Q. Is this hereditary, how did I end up with Dysautonomia?

A. There is such a wide range of how a person can end up living with Dysautonomia. It can be much like casting a net to figure out the cause. Many varieties run in families and researchers agree it can be hereditary. For some people symptoms begin after an event like a virus or a trauma, others find they have autonomic issues in relation to other illnesses such as Chronic Fatigue and Lupus.


Q. My family just doesn’t seem to understand what is happening to me, how can I help them understand?
A. You have a few options and if you can base how you approach sharing information with how you think they will best receive it. The What is Dysautonomia brochure from Dysautonomia International can be helpful. The Spoon Theory written by Christine Miserandino helps give a tangible explanation to life with a Chronic Illness. The Changes documentary is very informative and the information comes directly from medical professionals.

 

Q. My doctor said I probably have POTS, but hasn’t been able to answer what type of POTS I have. How do I know?

A. I understand this frustration and it is actually a very common in the world of Dysautonomia. Patients are left to find out on their own that there are in fact different types of POTS.

Partial Dysautonomia, PD – thought to be autoimmune and brought on by something specific like pregnancy, virus, accident etc..

Hyperadrenergic -this is more slow growing and progressive, a bit of a stronger version where you see tremors and the more fight than flight response

Secondary -POTS is more of a side effect of another medical issue

This is just for POTS specifically and POTS is again just one type of Dysautonomia. Many people wont fall into a clear type. For example I have Orthostatic Intolerance (usually a drop of 20/10 of BP when standing), Gastroparesis (partial paralysis of the stomach), mild Autonomic Sudomotor Neuropathy, Inappropriate Sinus Tachycardia and Bradycardia with an occasional postural trigger, POTS.

The following is from Dr. Grubb and can be seen in it entirety at the American Heart Association.

The most frequent form of primary POTS is the “partial dysautonomic” (or PD) form. These patients appear to suffer from a mild form of peripheral autonomic neuropathy characterized by the inability of the peripheral vasculature (especially the nervous system) to maintain adequate vascular resistance in the face of gravitational stress. This leads to a much greater than normal degree of blood pooling in the dependent areas of the body (legs, lower arms, and the mesenteric vasculature) while upright. The sequestration of blood away from the central vasculature elicits a compensatory increase in heart rate and myocardial contractility in an attempt to maintain cerebral perfusion at constant levels. Whereas the increase in heart rate and inotropy may initially be compensatory, the extent of peripheral venous pooling can continue to increase over time and exceed this compensatory effect. The patient then becomes increasingly dependent on the skeletal muscle pump to augment venous return and maintain adequate blood pressure. However, the degree of venous pooling may continue to increase and overcome this compensatory effect as well. A roughly 5:1 female to male ratio exists in this form of POTS. Many of these patients report that their symptoms begin after an acute febrile illness (presumed to be viral), as well as after pregnancy, surgery, sepsis, or trauma. It is presently felt that in many patients this form of POTS is an autoimmune disorder.

A second (and less frequent) form of POTS is termed the “hyperadrenergic” form.These patients often describe a more gradual and progressive emergence of symptoms over time rather then an abrupt onset. Patients with hyperadrenergic POTS often complain of significant tremor, anxiety, and cold sweaty extremities while upright. Over half of these patients experience migraine headaches as well as a significant increase in urinary output after being upright for only a short period of time. A characteristic of this form of POTS is that patients will often display orthostatic hypertension in addition to orthostatic tachycardia. Many will also have an exaggerated response to intravenous isoproterenol, as well as significantly elevated serum norepinephrine levels (>600 ng/mL) on standing. The disorder often has a strong family history. A study by Shannon et al found that some patients have a single point mutation that produces a poorly functioning reuptake transporter protein that recycles norepinephrine within the intrasynaptic cleft.1 This process leads to an excessive degree of norepinephrine serum spillover in response to a number of sympathetic stimuli, producing a “hyperadrenergic” state (similar to that seen in pheochromocytoma).

The term secondary POTS is used to describe a variety of conditions that produce a state of peripheral autonomic deinnervation or vascular unresponsiveness with relative sparing of cardiac innervation. A frequent cause of secondary POTS is chronic diabetes mellitus. However, it also may be seen in association with amyloidosis, sarcoidosis, alcoholism, lupus, Sjögren syndrome, chemotherapy, and heavy metal poisoning.
In some patients, POTS may be the presenting picture of a more severe autonomic nervous system disorder such as pure autonomic failure or multiple system atrophy. POTS can also be a form of paraneoplastic syndrome that can be seen with adenocarcinomas of the lung, breast, ovary, and pancreas. It has been reported that these tumors produce autoantibodies to the acetylcholine receptors of the autonomic ganglia similar to those identified in the postviral syndromes.

 

Q. I joined a Dysautonomia group and I have no idea what all the acronyms mean, help.

A. As an Army wife I live for acronyms! This is by no means all the acronyms associated with Dysautonomia and we can add to it if you think of one that should be included.

  • ANS   Autonomic Nervous System

Types of Dysautonomia and/or symptoms:

  • POTS   Postural Orthostatic Tachycardia
  • OI         Orthostatic Intolerance
  • OH        Orthostatic Hypotension
  • PAF      Pure Autonomic Failure
  • MSA     Multiple System Atrophy
  • NCS      Neurocardiogenic Syncope
  • NMS     Neurally Medicated Syncope (also referred to as NCS)
  • FD         Familial Dysautonomia
  • IST        Inappropriate Sinus Tachycardia
  • ISB        Inappropriate Sinus Bradycardia
  • EDS       Ehlers-Danlos Syndrome
  • MVP     MitroValve Prolaspe
  • CFS       Chronic Fatigue Syndrome
  • SVT      Supraventricular Tachycardia
  • GP         Gastroparesis

Tests relating to Dysautonomia

  • TTT         Tilt Table Test
  • QSART  Quantitative Sudmotor Axon Reflex Test
  • TST         Thermoregulatory Sweat Test
  • ECG        Electrocardiogram
  • EEG        Electroencephalography

 

Q. I love your Blog and all but where can I find other sources of information?

A. The Dysautonomia Sites I frequently visit:

Informative Sites:

Dysautonomia International

Dysautonomia Information Network

Great Blogs to get your information and a laugh or two:

You could always just stay right here ;)

Living with Bob (Dysautonomia)

Musings of a Dysautonomiac

 

Do you have a question about Dysautonomia? Did you have a question that you’d like included to help others? Let me know.